6 ms·

My mother had Lupus. It's kind of another "American medicine failure" story. She'd go to the doctor's office and get berated for being a painkiller junkie even

My mother had Lupus. It's kind of another "American medicine failure" story. She'd go to the doctor's office and get berated for being a painkiller junkie even though she never once asked for painkillers. Doctors would just look at her record and assume. When she finally did get a doctor that tried to help, she got put on this weird steroid that made her body a little stronger but at the cost of some brain fog. She was on that drug for 10-odd years before going to a different hospital on a whim. The new doctor concluded that actually the Lupus wasn't even active. It was in remission and had been for years. Turns out, the previous doctor was skipping some routine tests because the results were always the same. Mom got off the drug and her mind got better but her body didn't. Off the drug, she was basically in the same physical state as she was on the drug. Couldn't walk or even sit down for more than a couple hours without pain. So what's going on? She started getting her bones checked to see if there was some kind of alignment problem. There was some old film of her as a toddler that showed her walking funny, and she also once had a bad accident doing sports, which seemed like potential evidence for something skeletal. Before she could figure anything else out, she found a lump and got diagnosed with cancer. It originally looked like regular breast cancer but the breast cancer chemo didn't work. Turns out it's this super-rare "meta-plastic" cancer that nobody at the hospital had ever seen before. She just went through palliative care and hospice then died only a year after finding the tumor. Turns out there were some studies saying the drug she was on for longer than necessary is correlated with rare cancers. Unfortunately I don't have the name of the drug or the details of the cancer on hand right now. Anyway, it's cool to see some research that might eventually help Lupus patients avoid getting yelled at for popping pills (even when not actually popping pills).

friedman23 4y ago
Western health care philosophy is just so terrible for these classes of diseases that are just not well understood.
- aksss 4y ago
  The immune system is not understood well at all, but western medicine does have quantifiable success in treatment of lupus. In the 40’s or 50’s, scientists/clinicians tracked a cohort of representative lupus patients and within two years of diag most were dead. Today lifespan has been greatly extended, protecting the organs being a big advance. IF you have lupus, and IF you get diagnosed, and IF you can afford proper prophylactic drugs and IF you manage your diet, exercise, sleep, stress better that you ever used to, you can usually manage it and hit old age. The western lifestyle is a bigger impediment to health than western medicine.
PragmaticPulp 4y ago
Sorry to hear about the negative experience. When helping a family member through some health problems long ago, I learned that many of the primary care doctors that are easiest to get into are also some of the worst for dealing with complex problems. It makes sense when you think about it - Doctors who provide poor care or who assume the worst from the patients are the least likely to retain patients and therefore the most likely to have openings. What worked for us was finding a primary care doctor who was recommended by others, even if the wait for a new patient appointment was measured in months or years. From there, the PCP was used as a pivot point to get to specialists who knew what they were doing and as a contact point for basic medication management. Letting PCPs try to manage complex conditions is a mistake, IMO. I should mention that this failure mode isn't unique to American medicine. The same dynamic plays out in many countries and indeed in many industries beyond medicine. Getting into the experts who know what they're doing is hard because they're in the highest demand. Getting into below-average providers of any profession is always easy because they're not buried under referrals and people knocking on their door.
- treeman79 4y ago
  Chronic illness, and various autoimmune forums on Facebook / Reddit are great resources for learning. What tests to get. What sort of doctors to see. What works and doesn’t work. Tips dealing with doctors.
  - PragmaticPulp 4y ago
    They can be good resources, but depending on the condition they can also be a huge source of misinformation. Don’t take any one group too literally because some of them become echo chambers of misinformation and actively hostile to anyone who disagrees. There are even a few chronic conditions that attract a lot of incorrect self-diagnosed people who insist they have the condition despite every test suggesting they don’t. For example, many people self-diagnose as having various thyroid disorders based on vague symptoms (or WebMD, etc) but won’t let go of the diagnosis when all of their thyroid tests come back perfectly normal. This leads to weird social media bubbles where people insist the tests are wrong and start sourcing their own medications, with predictably bad results. Low testosterone is the current big trap for men. You can find social media groups that claim that testosterone is basically a cure-all and that the current reference ranges are far too low. Again, they’re usually quite confused when they finally get a testosterone prescription and it doesn’t fix all of their problems like the Facebook groups or TikToks led them to believe. Be careful out there.
bagels 4y ago
What is in a Lupus patient's chart that causes doctors to think they are drug seeking?
- oneoff786 4y ago
  Pain, most likely
- resonious 4y ago
  The sibling comment is correct. Lupus gets you access to all kinds of schedule 2 drugs that some people really get a kick out of. Not to mention, there's often no outside "proof" that someone's immune system is attacking them. A normal looking person walks in and says "hey I have Lupus" and the docs can't really do anything but give them pain pills.
  - stephen_g 4y ago
    The inflammation associated with Lupus should show up in blood tests (CRP and ESR) while it's flaring, as it does in other autoimmuine diseases. (Those markers are super non-specific and all sorts of things can raise them, but it is a measurable data point).
    - ranger_danger 4y ago
      You can get also get an ANA test for lupus.
      - FollowingTheDao 4y ago
        An ANA can be negative even if you have Lupus. It is rare, but his is one the the problems? Is it rare because it is rare or because they are not testing for it? https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/ https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/ "In fact, only 2% of people with lupus will have a negative ANA. People with lupus who have a negative ANA test may have anti-Ro/SSA or antiphospholipid antibodies." The current protocol is that if your ANA is negative they will not look any further. See figure 2: https://ard.bmj.com/content/78/9/1151 https://ard.bmj.com/content/78/9/1151
mr337 4y ago
I am sorry for your loss you and your mother had to go through. I don't think I have ever experienced frustration at the level that you have working with the medical system in US.
wnolens 4y ago
Damn that is a lot, I'm sorry. I can imagine it's hard to find peace with those circumstances. My sister is experiencing these symptoms too and puts it on MS, but doctor can't confirm and in the meantime basically medical system is zero help. Canada is a bad place to be debilitatingly ill but not visibly bleeding out.
_0w8t 4y ago
Such a sad story. With women the experience is typically worse on average when they talk to doctors as the doctors even female one trust them less than male patients. Even feminists advise to go to a doctor with a husband or male relative or friend and let them do the talking.
- Mordisquitos 4y ago
  I'd never heard that, but it sounds to me like the other side of the same coin regarding what's commonly said of men: that they delay going to the doctor for too long as symptoms progress, or even don't go at all unless insisted upon. It could be that, on average, doctors become accustomed to the idea that when a man visits them it must be very serious, and therefore when they are visited by women they generally display milder or less obvious signs and symptoms by comparison (again, on average). Hence, doctors may get the impression that women are more hypochondriac than men when the fact of the matter is actually the inverse.
  - ad404b8a372f2b9 4y ago
    Men get routinely ignored, disrespected and misdiagnosed as well. The doctor-patient relationship is adversarial (when facing someone you don't already know), what matters is not what they choose to give you, it's what you can take from them. This is why people who are more assertive and confident will generally do better, as well as people who come in groups.
    - FollowingTheDao 4y ago
      Yes, I am a man with Lupus, they ignored my lab test results for 35 years before I forced them to give me a Lupus panel to get me to a rheumy.
- Dma54rhs 4y ago
  It's kind of rude to write that when men proportionally due way younger than women, the outcomes are systemically sexist.
FollowingTheDao 4y ago
You Mom's story is so sad and it is why I do not go to doctors anymore. My mother probably had lupus as well that went undiagnosed her hole life. We have all the same symptoms but she died before I was diagnosed. I have lupus. I am on disability for it mostly because of the neuropsychiatric issues. It took 35 years for them to diagnose me and it was the doctors who figured it out, it was because of my own investigations. When I look at these drugs I asked them "can I do the same with diet and environmental changes", they said no. I proved them wrong. I still have flare ups and they are sometimes unpredictable. Just three days ago I had a psychotic episode from COVID, and stress can set me off as well, but the constant pain is not there and my WBC is up and my panels are usually negative. The biggest problem my mother and I had was that we had neuropsychiatric lupus which meant they they only saw the mental illness and refused to look at other issues. I had constant low WBC, hyperkalemia, leukopenia, discoid lupus, and arthritis but all they ever saw was the metal illness. So I mostly proved them wrong. For most people with Lupus, it can be overcome with diet and environmental changes. So, back to the article. I hate articles like this. Lupus is a highly polygenic disease. I have my genetics, I have some SNPs in TLR7 gene at ~10% for europeans. But I feel my Lupus is mostly caused by several purine nucleoside phosphorylase (PNP) SNPs. https://pubmed.ncbi.nlm.nih.gov/28859258/ https://pubmed.ncbi.nlm.nih.gov/28859258/ But it does not end there, I see STAT4, IL10RB, TNFAIP3 and mutations that probably play a role. But how is it my diet can negate all these SNPs? Why do some people with these SNPs not get Lupus. For me, this is where diet and my FADS1 and FAD2 genes play a role. Ever since I started eating only fish and shellfish, and zero plant oils but for some olive oil I have been way more stable than any drug they gave me. https://www.lupus.org/news/study-shows-omega3-fatty-acid-supplementation-linked-to-reduced-inflammation-and-flaring-in https://www.lupus.org/news/study-shows-omega3-fatty-acid-sup... I thought being vegan would help when I was younger but it made me worse. So while that kid is interesting it makes it seem like there is nothing the rest of us can do who do not have these rare point mutations. TLR7 mutations do not cause every case of Lupus.

friedman23 4y ago

Western health care philosophy is just so terrible for these classes of diseases that are just not well understood.

aksss 4y ago
The immune system is not understood well at all, but western medicine does have quantifiable success in treatment of lupus. In the 40’s or 50’s, scientists/clinicians tracked a cohort of representative lupus patients and within two years of diag most were dead. Today lifespan has been greatly extended, protecting the organs being a big advance. IF you have lupus, and IF you get diagnosed, and IF you can afford proper prophylactic drugs and IF you manage your diet, exercise, sleep, stress better that you ever used to, you can usually manage it and hit old age. The western lifestyle is a bigger impediment to health than western medicine.

PragmaticPulp 4y ago

Sorry to hear about the negative experience. When helping a family member through some health problems long ago, I learned that many of the primary care doctors that are easiest to get into are also some of the worst for dealing with complex problems. It makes sense when you think about it - Doctors who provide poor care or who assume the worst from the patients are the least likely to retain patients and therefore the most likely to have openings. What worked for us was finding a primary care doctor who was recommended by others, even if the wait for a new patient appointment was measured in months or years. From there, the PCP was used as a pivot point to get to specialists who knew what they were doing and as a contact point for basic medication management. Letting PCPs try to manage complex conditions is a mistake, IMO. I should mention that this failure mode isn't unique to American medicine. The same dynamic plays out in many countries and indeed in many industries beyond medicine. Getting into the experts who know what they're doing is hard because they're in the highest demand. Getting into below-average providers of any profession is always easy because they're not buried under referrals and people knocking on their door.

treeman79 4y ago
Chronic illness, and various autoimmune forums on Facebook / Reddit are great resources for learning. What tests to get. What sort of doctors to see. What works and doesn’t work. Tips dealing with doctors.
- PragmaticPulp 4y ago
  They can be good resources, but depending on the condition they can also be a huge source of misinformation. Don’t take any one group too literally because some of them become echo chambers of misinformation and actively hostile to anyone who disagrees. There are even a few chronic conditions that attract a lot of incorrect self-diagnosed people who insist they have the condition despite every test suggesting they don’t. For example, many people self-diagnose as having various thyroid disorders based on vague symptoms (or WebMD, etc) but won’t let go of the diagnosis when all of their thyroid tests come back perfectly normal. This leads to weird social media bubbles where people insist the tests are wrong and start sourcing their own medications, with predictably bad results. Low testosterone is the current big trap for men. You can find social media groups that claim that testosterone is basically a cure-all and that the current reference ranges are far too low. Again, they’re usually quite confused when they finally get a testosterone prescription and it doesn’t fix all of their problems like the Facebook groups or TikToks led them to believe. Be careful out there.

bagels 4y ago

What is in a Lupus patient's chart that causes doctors to think they are drug seeking?

oneoff786 4y ago
Pain, most likely
resonious 4y ago
The sibling comment is correct. Lupus gets you access to all kinds of schedule 2 drugs that some people really get a kick out of. Not to mention, there's often no outside "proof" that someone's immune system is attacking them. A normal looking person walks in and says "hey I have Lupus" and the docs can't really do anything but give them pain pills.
- stephen_g 4y ago
  The inflammation associated with Lupus should show up in blood tests (CRP and ESR) while it's flaring, as it does in other autoimmuine diseases. (Those markers are super non-specific and all sorts of things can raise them, but it is a measurable data point).
  - ranger_danger 4y ago
    You can get also get an ANA test for lupus.
    - FollowingTheDao 4y ago
      An ANA can be negative even if you have Lupus. It is rare, but his is one the the problems? Is it rare because it is rare or because they are not testing for it? https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/ https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/ "In fact, only 2% of people with lupus will have a negative ANA. People with lupus who have a negative ANA test may have anti-Ro/SSA or antiphospholipid antibodies." The current protocol is that if your ANA is negative they will not look any further. See figure 2: https://ard.bmj.com/content/78/9/1151 https://ard.bmj.com/content/78/9/1151

mr337 4y ago

I am sorry for your loss you and your mother had to go through. I don't think I have ever experienced frustration at the level that you have working with the medical system in US.

wnolens 4y ago

Damn that is a lot, I'm sorry. I can imagine it's hard to find peace with those circumstances. My sister is experiencing these symptoms too and puts it on MS, but doctor can't confirm and in the meantime basically medical system is zero help. Canada is a bad place to be debilitatingly ill but not visibly bleeding out.

_0w8t 4y ago

Such a sad story. With women the experience is typically worse on average when they talk to doctors as the doctors even female one trust them less than male patients. Even feminists advise to go to a doctor with a husband or male relative or friend and let them do the talking.

Mordisquitos 4y ago
I'd never heard that, but it sounds to me like the other side of the same coin regarding what's commonly said of men: that they delay going to the doctor for too long as symptoms progress, or even don't go at all unless insisted upon. It could be that, on average, doctors become accustomed to the idea that when a man visits them it must be very serious, and therefore when they are visited by women they generally display milder or less obvious signs and symptoms by comparison (again, on average). Hence, doctors may get the impression that women are more hypochondriac than men when the fact of the matter is actually the inverse.
- ad404b8a372f2b9 4y ago
  Men get routinely ignored, disrespected and misdiagnosed as well. The doctor-patient relationship is adversarial (when facing someone you don't already know), what matters is not what they choose to give you, it's what you can take from them. This is why people who are more assertive and confident will generally do better, as well as people who come in groups.
  - FollowingTheDao 4y ago
    Yes, I am a man with Lupus, they ignored my lab test results for 35 years before I forced them to give me a Lupus panel to get me to a rheumy.
Dma54rhs 4y ago
It's kind of rude to write that when men proportionally due way younger than women, the outcomes are systemically sexist.

FollowingTheDao 4y ago

You Mom's story is so sad and it is why I do not go to doctors anymore. My mother probably had lupus as well that went undiagnosed her hole life. We have all the same symptoms but she died before I was diagnosed. I have lupus. I am on disability for it mostly because of the neuropsychiatric issues. It took 35 years for them to diagnose me and it was the doctors who figured it out, it was because of my own investigations. When I look at these drugs I asked them "can I do the same with diet and environmental changes", they said no. I proved them wrong. I still have flare ups and they are sometimes unpredictable. Just three days ago I had a psychotic episode from COVID, and stress can set me off as well, but the constant pain is not there and my WBC is up and my panels are usually negative. The biggest problem my mother and I had was that we had neuropsychiatric lupus which meant they they only saw the mental illness and refused to look at other issues. I had constant low WBC, hyperkalemia, leukopenia, discoid lupus, and arthritis but all they ever saw was the metal illness. So I mostly proved them wrong. For most people with Lupus, it can be overcome with diet and environmental changes. So, back to the article. I hate articles like this. Lupus is a highly polygenic disease. I have my genetics, I have some SNPs in TLR7 gene at ~10% for europeans. But I feel my Lupus is mostly caused by several purine nucleoside phosphorylase (PNP) SNPs. https://pubmed.ncbi.nlm.nih.gov/28859258/ https://pubmed.ncbi.nlm.nih.gov/28859258/ But it does not end there, I see STAT4, IL10RB, TNFAIP3 and mutations that probably play a role. But how is it my diet can negate all these SNPs? Why do some people with these SNPs not get Lupus. For me, this is where diet and my FADS1 and FAD2 genes play a role. Ever since I started eating only fish and shellfish, and zero plant oils but for some olive oil I have been way more stable than any drug they gave me. https://www.lupus.org/news/study-shows-omega3-fatty-acid-supplementation-linked-to-reduced-inflammation-and-flaring-in https://www.lupus.org/news/study-shows-omega3-fatty-acid-sup... I thought being vegan would help when I was younger but it made me worse. So while that kid is interesting it makes it seem like there is nothing the rest of us can do who do not have these rare point mutations. TLR7 mutations do not cause every case of Lupus.